I try to keep my suicidal ideation to myself when I'm around my husband, who loves me very much but has a short temper. I was upset today when my doctor refused to fill a sleep medication for my severe insomnia. I have no other treatment options. This was my last chance at getting sleep. I quietly confessed to my dear friend on the phone that I am at the point where I'm going to get some fentanyl. My husband overheard this and is furious with me. He's seen me struggling with worsening insomnia for decades. He sees me lying on the couch day after day, existing on two or three hours sleep. He knows I don't have a life and was putting all my hope into this medication - Quiviviq - that I was hoping my doctor would prescribe. I don't know how to deal with my husband's anger. I know it comes from hurt, frustration and a feeling of helplessness. I asked him to write a letter to my doctor, telling him that he has witnessed how I am suffering, and how well and happy I feel on the rare nights I do sleep. But he refuses to write the letter. How do you handle a partner or parent who will not tolerate your suicidal thoughts?
I'm having a heck of a time trying to respond to you! I hope you can read this. I'm so happy you're using your CPAP, Sasu-Ke. It's a hassle but it's so good for your health to stick with it. My brother used to have one. Alas, I have two health conditions, ME/CFS and Long Covid, where I cannot exert myself. If I do, I become VERY sick. I can take 15 minute walks. That's about it. It's been that way for 14 years. But the advice is EXCELLENT for anyone else with insomnia who can exercise. Sweet dreams.
i'm so sorry you're going through such severe insomnia :( i have several friends who have moderate to severe me/cfs and insomnia has been one of the most debilitating symptoms for them. i'm so, so sorry that you're dealing with this cruel disease. it's horrible that the doctor refused to fill a sleep medication! and it is ridiculous that your husband won't write a letter to your doctor, why is he refusing? i'm wondering, could you contact one of the me/cfs advocacy groups about this, a local or national one? maybe they could apply pressure to the doctor, or maybe they know a different doctor in your area who would be willing to write this prescription?
i will speak from personal experience here, several of my close friends have me/cfs. during the worst of their symptoms, they talk about ctb often. i sometimes feel panicked and scared during these conversations. it hurts to witness them suffer so deeply, and it hurts to imagine what life would be like if they were gone. sometimes i worry that i will say or do the wrong thing, and they will just leave and ctb, and it will be all my fault. every time, it feels like their life is in my hands.
i am honored to support them in this way, and it means a lot to me that they trust me enough to open up about how they're feeling. but sometimes, i am not able to handle the feelings of responsibility, pressure, or distress that i feel during these conversations. however, it never even crosses my mind to get angry at them in these moments. they are in a horrible situation, and they want relief, how could i ever be angry at them for this? i am angry at the world, i am angry at the medical establishment, i am angry at society. i am never angry at them. so it worries me a lot that your husband reacts by being angry at you. you're already going through an immensely difficult situation, and you deserve support and care, and i'm sorry you are being treated this way :( you can have compassion for the source of his emotions, while also recognizing that partners should treat each other with respect, support, and care rather than anger.
if my friends talk about ctb so much that i cannot handle it anymore, i communicate it to them, and they respect my boundaries. they talk to someone else instead about their desire to ctb. do you and your husband have something like this in place, where if him hearing about you wanting to ctb is too intense and he can't handle it anymore, he can communicate this to you, and you can tell someone else? more importantly, do you both have support systems so you both can lean on other people too, not just each other? and lastly, do you both have therapists who you can work with during this difficult time? i think it is difficult for most people and even most therapists to understand the grief and complexity of chronic illness. but maybe a chronic illness therapist, or a therapist who specializes with end of life patients, would be helpful.
last thing, in the next paragraph, i wrote down what medications my friends with me/cfs take to get better sleep after much trial and error. please feel free to skip this paragraph if you don't want to read it, as i imagine you have already tried so many insomnia medications. but i wrote it down on the off chance that it could be helpful for you:
one of my friends tried every sleeping medication on
this list from the me/cfs clinician coalition, as well as
this list from the bateman horne center, until they found a combination of meds that helped. they expect it will eventually lose its effectiveness, but they have been on the same protocol for many months with no tolerance built up yet. they take seroquel, trazodone, mirtazapine, and one or two other meds for insomnia. and they sometimes add an additional sleep med that they rotate between as to not build a tolerance. for example they might take clonazapam on monday, dextromethorphan on wednesday, lunesta on friday, benadryl on sunday, and so on. they went from 2-3 hours of sleep to 5-6, and it really helped. my impression was that the atypical antipsychotic was the most impactful for them. i dont remember what regimen my other friends take for insomnia, but i'd be happy to ask if it would be helpful at all.
once again, i am so sorry you are going through this
